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This June, Help the Men in Your Life Be Healthier

/in /by The Arc

Father And Son PortraitIn June, we celebrate Men’s Health Month and encourage men of all ages with disabilities to learn more about preventable health problems and to practice good health habits.

Why raise awareness about men’s health?

According to the Movember Foundation, around the world, men die an average of 6 years earlier than women. One of the key reasons for this difference is because men often don’t practice good health habits.

Men are less likely to visit a doctor when they are ill. And, when they do visit a doctor, they are less likely to talk with their doctor about the symptoms they experience. As a result, men reduce their chances of receiving the best care for their illnesses.

Men with disabilities often experience additional obstacles and challenges to good health. Barriers to health care and good health may include:

  • Difficulty getting to/from a doctor or inaccessible medical equipment
  • Challenges clearly communicating with a doctor about symptoms, treatment options, and medications so that the patient understands why testing out different treatment options or medications may be necessary
  • Challenges finding doctors who have expertise and are comfortable working with and treating people with disabilities
  • Lack of insurance to visit the doctor or inability to pay for services
  • Lack of education about good health habits
  • Perception from some doctors that problems are because of disability, not general health issues

Perception from some people that people with disabilities cannot practice good health habits

How can I help the men with and without disabilities I know to be healthier?

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2015: A Year in ABLE

/in /by The Arc

This month, states are beginning to launch ABLE Act programs and some people with disabilities can now take advantage of this new opportunity to build assets while preserving eligibility for means-tested federal benefits. Let’s take a look at what’s happened over the last 18 months.

As 2014 closed, Congress enacted the Stephen Beck, Jr. Achieving a Better Life Experience (ABLE) Act. This legislation recognized the extra costs of living with a disability and is anticipated to positively impact the economic futures of people with disabilities and their families. Lead sponsors in the Senate were Bob Casey (D-PA) and Richard Burr (R-NC); other key senatorial champions were Ron Wyden (D-OR) and Orrin Hatch (R-UT). ABLE was introduced in the House of Representatives by Ander Crenshaw (R-FL) and leading co-sponsors were Chris Van Hollen (D-MD), Cathy McMorris Rodgers (R-WA), and Pete Sessions (R-TX) with critical support from Kevin McCarthy (R-CA). By December 3, 2014, it had garnered 380 of the 435 U.S. representatives as co-sponsors and passed the House by a vote of 404-17. The Senate version of ABLE secured 78 co-sponsors, making ABLE one of the most bipartisan laws ever passed by the U.S. Congress. On December 19, 2014, President Obama signed the ABLE Act into law.

This law will ease financial strains through the use of tax-advantaged savings accounts. Qualifying individuals would be those who: 1) experience disability onset before age 26, and 2) either are a Social Security disability program beneficiary or submit a disability certification (meet certain criteria for the Social Security Administration’s (SSA) definition of disability and possess a written diagnosis from a licensed physician). Account funds may be used for a variety of disability-related purposes, such as basic living expenses; education; housing; transportation; employment training and support; assistive technology and related services; personal support services; health, prevention, & wellness expenses; legal, financial, & administrative services; oversight and monitoring; as well as funeral & burial expenses, all the while protecting eligibility for means-tested federal benefits, including SSI and Medicaid.

The law established new requirements which apply to ABLE account holders who are also SSI recipients. Once an account exceeds $100,000, an individual is placed into a special SSI suspension period with no time restrictions. During this time, the beneficiary’s Medicaid eligibility will remain intact but cash benefits will be suspended. When ABLE funds once again dip below $100,000, SSI is automatically reinstated.

The law also established requirements specific to Medicaid eligibility. The $100,000 limit that applies to the SSI program does not apply to Medicaid. However, upon the beneficiary’s death, remaining funds in the account may be required to pay back the state for Medicaid services provided during the individual’s lifetime.

Shortly after ABLE’s passage on the federal level, a legislative frenzy to create ABLE programs ensued at the state level. Responding to this enthusiasm, in March 2015 the Internal Revenue Service (IRS), advised that states could move forward with these legislative plans even though federal regulations were not yet in place. The agency assured that once regulations were published, there would be a “transition relief” period, which would provide “sufficient time” for states to execute changes which would ensure federal compliance.

In June 2015, the Department of Treasury and the IRS published proposed regulations. A public comment period followed, and in October, advocates voiced their concerns at a public hearing held in Washington, DC. Treasury and IRS officials took advocates’ words to heart, and in November, the entity released interim guidance that lessened some administrative burdens and program costs while creating a more accessible program. Among other things, participants would no longer be required to provide medical documentation upon opening an account.

Lastly, in December 2015, a major revision to the original ABLE legislation was signed in law, lifting the residency requirement, thus permitting states to offer national rather than state-resident only programs.

In the meantime, people with disabilities and their advocates sought further changes that would widen the scope of the law. As a result, in March 2016, three new ABLE improvement bills were introduced. Each seeks to strengthen a different aspect of the original bill. Below is a short summary of each:

  • The ABLE Age Adjustment Act would raise the age limit for eligibility for ABLE accounts to individuals disabled prior to age 46. The Senate bill (S. 2704) is sponsored by Senator Bob Casey while the House version (H.R. 4813) is sponsored by Representative Chris Van Hollen.
  • The ABLE Financial Planning Act would allow tax-free rollovers between an existing 529 college savings account and an ABLE account. Senator Bob Casey has introduced the Senate bill (S. 2703), while Representative Ander Crenshaw is sponsoring the House version (H.R. 4794).
  • The ABLE to Work Act would allow individuals to exceed the annual contribution limit and save more money in an ABLE account if the individual earns income. The Senate bill (S. 2702) is sponsored by Senator Richard Burr while the House version (H.R. 4795) is sponsored by Representative Ander Crenshaw.

Today over 90% of the states have enacted their own ABLE act and most are focusing on implementation. Opening their ABLE programs earlier this month, Ohio and Tennessee are leading the way; Nebraska is expected June 30; and Florida is set to offer accounts July 1. With the exception of Florida, all will be national programs. It is anticipated that up to 40% of the remaining states that have enacted legislation will have programs active by year-end. For more information on where a particular state is in the process, please see The Arc’s ABLE implementation chart.

Update: On June 30, 2016, Nebraska opened their ABLE program.

Update: On July 1, 2016, Florida opened their ABLE program

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The Arc’s Center for Future Planning™ Launches Financial Literacy Training for Low-Income Families With Children With Disabilities

/in /by The Arc

Washington, DC – The Arc’s Center for Future Planning™ is pleased to announce it has received a $200,000 two-year grant from the MetLife Foundation. This funding will be dedicated toward developing a new financial literacy training program for families that include a child with intellectual and developmental disabilities (IDD), with a specific interest in reaching historically underserved racial and ethnic communities.

Research has shown that disability and poverty are intertwined, and many families that have a child with IDD struggle financially. Often, income declines when a child with IDD is born because parents take time off of work or leave the workforce entirely to care for the child’s needs. This reduction of household income, combined with the income and asset limits in many public means-tested benefits available to these families, only complicates asset building.

The training will address these challenges by educating and supporting low-income families to lay the foundation for a secure financial future for their child with IDD. More specifically, The Arc will develop a financial literacy curriculum that can be later distributed throughout The Arc’s national network of over 650 chapters. Topics to be covered will include credit, debt, choosing financial products and services, investing, and asset protection, as well as disability-related topics, such as information on benefits for people with disabilities, as well as special needs trusts and ABLE Act accounts.

“During our 65 year history, The Arc has always recognized the importance of supporting families of people with IDD. In these challenging economic times, it is all the more important that we work with families of children with IDD to stabilize the family’s financial situation. This support from the MetLife Foundation will allow The Arc to assist families in achieving long-term financial stability,” said Peter Berns, CEO of The Arc.

The Arc will lead a team to create a nationally replicable, culturally competent curriculum to provide financial literacy education to low-income families. After piloting the training with three chapters, The Arc will modify the curriculum so that it can be distributed through our network of chapters around the country. This work will also be supported by the Family Support Research and Training Center through a subcontract with the University of Illinois at Chicago and made possible by grant number 90RT5032-02-01 from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) at the US Department of Health and Human Services Administration for Community Living (US DHHS/ACL).

The mission of The Arc’s Center for Future Planning is to support and encourage adults with IDD and their families to plan for the future. The Center provides reliable information and assistance to individuals with IDD, their family members and friends, professionals who support them and other members of the community on areas such as person-centered planning, decision-making, housing options, and financial planning.

The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

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Federal Agency Committed to Hiring, Promoting Employees With Disabilities

/in /by The Arc

Keith Coburn 2Eighty-five percent of working-age individuals with disabilities are either unemployed or underemployed. Of the 15% that are employed, only half are working in inclusive jobs in the community. Fortunately, new government regulations are focused on changing these grim statistics. A recently proposed rule would require federal agencies to achieve a workforce participation rate of 12% for people with disabilities. One proactive agency, the Federal Communications Commission (FCC), is already leading by example, implementing an initiative dedicated to individuals with disabilities working in competitive and inclusive positions. The Arc’s employment division, The Arc@Work, has been supporting the FCC with their hiring efforts.

After working seasonal and part-time jobs for years, Keith Coburn was ready for the stability and security that comes with full-time employment. So, he reached out to his local chapter of The Arc, The Arc of Prince George’s County in Maryland, where he was connected through The Arc@Work to an opportunity at the FCC. A year and a half on the job, Keith performs a variety of tasks that range from sorting mail to updating and maintaining the database of licensing sales and transfers. As a problem-solver and a “master of Excel”, Keith’s responsibilities have grown steadily at the FCC and he is in the process of receiving his second promotion.

The quality of Keith’s work and his strong work ethic have made, and continue to make, a huge impression on all those who have had the opportunity to work with him. When asked to describe Keith, his supervisors, Annette Smith and Lisa Scanlan, expressed nothing but high praise. “Dependable”, “great team member”, and “great work product” were only some of the ways they described Keith’s performance.

“When Keith is assigned work, he always completes his task on time,” commented Annette. Lisa summed it up by adding: “He always steps up to the plate. He is the ideal employee.” Keith attributes his success to his determination. His advice? “Stick with it. Be flexible and be persistent,” said Keith.

The Arc@Work is a social enterprise that supports employers to successfully locate, hire, and support employees with intellectual and developmental disabilities. To learn more, visit our website at thearc.org/thearcatwork or contact Katherine Murphy at Murphy@thearc.org.

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The Arc of Delaware Reaches Fair Housing Settlement

/in , /by The Arc

Washington, DC – The Arc of Delaware and its counsel Relman, Dane & Colfax, The Arc of the United States, and Community Legal Aid Society, Inc. are thrilled to announce the recent settlement of The Arc of Delaware’s disability discrimination complaint against Sugar Maple Farms Property Owners’ Association, Inc. (SMFPOA). That complaint, filed in March 2015 with the U.S. Department of Housing and Urban Development (HUD) and the Delaware Division of Human Relations (DHR), sought a declaration that SMFPOA violated the Fair Housing Act when it refused to approve The Arc of Delaware’s acquisition of property meant to house four individuals with intellectual and developmental disabilities (IDD) in a single family home integrated within the community. The complaint sought damages to compensate for the loss of housing opportunities and for violations of the federal and Delaware Fair Housing Acts due to disability discrimination. After DHR issued a finding of discrimination in March 2016, SMFPOA agreed to settle the case and has entered into a Conciliation Agreement with DHR, HUD, and The Arc of Delaware as of May 26, 2016.

“This case shows the importance of vigorously enforcing the Fair Housing Act,” noted Michael Allen, a partner with Relman, Dane & Colfax. “Although the Act has prohibited disability discrimination for nearly 30 years, we still need to fight every day to redeem the promise of community living for people with disabilities.”

In July 2014, Terry Olson, Executive Director, submitted a bid on behalf of The Arc of Delaware for a lot owned by SMFPOA. The Arc of Delaware intended to build a single family house in a Milford, Delaware residential subdivision with 65 other lots. His offer was accepted by the seller contingent on SMFPOA’s approval of the sale. However, once SMFPOA learned that residents with IDD would be living there, it told Mr. Olson that such use was barred by its covenants and also expressed concerns about the amount of parking that would be required by the residents’ support staff.

Mr. Olson tried to explain that The Arc of Delaware’s use was protected by the Fair Housing Act and offered to accommodate the extra parking needs while maintaining a uniform appearance within the community. He also offered to give SMFPOA members a tour of a similar home in the area in order to allay any concerns about daily operations. Shortly thereafter, The Arc of Delaware received a letter from SMFPOA reiterating its position that the sale was not approved because it would violate SMFPOA’s covenants and suggesting that allowing people with IDD into the community would reduce property values and disturb the “quiet enjoyment” of neighbors. The loss of the property and subsequent delay in state funding have deprived The Arc of Delaware and its clients of at least four community-based housing opportunities.

The Fair Housing Amendments Act of 1988 (FHAA) makes it unlawful to “make unavailable or deny” a dwelling because of disability as well as to refuse to make “reasonable accommodations in rules, policies, practices, or services, when such accommodations may be necessary to afford such person equal opportunity to use and enjoy a dwelling.” Federal courts have consistently held that community supported housing for unrelated individuals with IDD does not constitute a “business” and does not violate “single family” restrictions, and Delaware law expressly recognizes such housing as “single family” properties for zoning purposes. Further, the courts recognize that most discriminatory remarks are made in coded language, such as the need to “maintain property value.”

Once the complaints had been filed, DHR performed an investigation and issued a finding of discrimination in March 2016. Subsequently, SMFPOA agreed to settle the case. Among other things, the Conciliation Agreement requires SMFPOA to:

  • Apply the same terms and conditions of rental to anyone occupying its properties without regard to disability or any other protected class;
  • Provide written compliance reports to DHR and/or HUD when requested;
  • Allow HUD and DHR to inspect the premises at any time within one year of the agreement;
  • Notify its members and residents in writing of rules, policies, and practices relating to its non-discrimination policy and to prominently display the Equal Housing Opportunity logo within any relevant advertisements it distributes;
  • Ensure that all of its current board members receive comprehensive training on the Fair Housing Act within 90 days of signing the agreement and that all future board members receive such training within 30 days of their election;
  • Pay The Arc of Delaware $55,000 in damages, including attorneys’ fees and costs.

Mr. Olson remarked: “It is challenging enough in Delaware for individuals with IDD to find affordable housing in the community. When you add discrimination to the mix, it makes it nearly impossible. This victory will help ensure that individuals with disabilities in Delaware will have the same rights as other citizens to live in the community of their choice.”

Shira Wakschlag, Staff Attorney with The Arc of the United States, noted: “For more than 65 years, The Arc has sought to enforce and protect the human and civil rights of individuals with IDD by working to ensure those with disabilities are able to live in the community free from discrimination and institutional settings. Without the vigorous enforcement of state and federal disability rights laws in instances of discrimination such as this one, this fundamental right would be eroded.”

Relman, Dane & Colfax, a civil rights law firm based in Washington, D.C., served as lead counsel on the case, with The Arc of the United States and Community Legal Aid Society, Inc. serving as co-counsel.

The Arc advocates for and serves people with intellectual and developmental disabilities (IDD), including Down syndrome, autism, Fetal Alcohol Spectrum Disorders, cerebral palsy and other diagnoses. The Arc has a network of over 650 chapters across the country, including The Arc of Delaware, promoting and protecting the human rights of people with IDD and actively supporting their full inclusion and participation in the community throughout their lifetimes and without regard to diagnosis.

Editor’s Note: The Arc is not an acronym; always refer to us as The Arc, not The ARC and never ARC. The Arc should be considered as a title or a phrase.

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Statement From Julie Petty, Loretta Claiborne, Ricardo Thornton, and Frank Stephens

/in /by The Arc

IMG_0788On June 6, 2016, a group of self-advocate leaders met with Gary Owen to discuss offensive content in his Showtime comedy special “I Agree With Myself”.

Statement from Julie Petty, Loretta Claiborne, Ricardo Thornton, and Frank Stephens:
Today, Julie Petty (Bentonville, Arkansas), Loretta Claiborne (York, Pennsylvania), Ricardo Thornton (Washington, D.C.), and Frank Stephens (Fairfax, Virginia), representing a broad coalition of disability advocates, met with Gary Owen, a comedian and entertainer. The meeting was arranged for both sides to listen and hear one another’s perspectives about a segment on Mr. Owen’s comedy special on Showtime.

Prior to the meeting, Mr. Owen decided to remove the segment in his Showtime special in which he depicts people with intellectual disabilities. Effective immediately, the special will still be available On Demand but will not include this portion.

The meeting was educational, positive and productive. The outcomes from the meeting were significant. Mr. Owen made positive commitments regarding use of the “R word” in his comedy routine.

The coalition has agreed to end its advocacy efforts in this situation. The coalition, through the voices of self advocates Julie Petty, Loretta Claiborne, Ricardo Thornton and Frank Stephens, express our appreciation to Mr. Owen for listening and acting positively to further understanding and healing.

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Roll the Vote

/in /by The Arc

I am an individual with a disability, diverse needs, and I am also civically engaged and politically active. I’ve discovered that it is nearly impossible for me to shy away from my civic duties and the issues that affect me the most. You can thank former First Lady Barbara Bush for this, as one of the most defining civic moments was when I was eight, and I gave her a tour of the residential care facility in which I lived at the time. When she asked me, “What do you want to be when you grow up?” My response was, “I want to be the first female President of the United States, but I don’t know. I have this wheelchair thing.” Mrs. Bush reminded me that one of our great presidents, FDR, also had a wheelchair thing. She also said that the MOST important thing I could do was register to vote when I turned 18.

This event inspired me to learn as much as I could about the political process and the various levels of governance. On my 18th birthday, I decided to follow the advice of Mrs. Bush and I registered to vote. It is the best decision I’ve made in my life. Ever.

Registering to vote was an uncomplicated process for me. Being informed on the issues and candidates: that was a little more challenging. I don’t speak political acronyms or legalese. Finding people who could explain things to me in an understandable manner, without treating me as intellectually inferior, was dang near impossible.

I heard a saying once that goes like this: “What’s the best way to eat an elephant? One bite at a time, of course.” I promised myself that I would approach political involvement and voting the same. Even today, I take one bite at a time, and one step at a time. I spend months reading and researching issues, ballot initiatives, and candidates so I am comfortable and confident in my decisions.

I continued to pay attention to major milestones in the disability community. In 1990 the ADA was signed into law, the same day I left the residential care facility where I had met Mrs. Bush. I spent the rest of my formative years in a small town (400-ish people) in a very rural state. South Dakota has an approximate total population of 800,000. With numbers that small, I realized that every vote is very important; it all matters.

I continued to play an active part in civics and in 2002 I was very thankful for the passage of the Help America Vote Act. This act provided information, resources and technologies which have made the voting process much easier for me. However, improved access and information does not automatically eliminate ignorance. That’s what humor is for.

In the 2014 US Senate election for South Dakota, I was happy to vote for former governor M. Mike Rounds. I had spent months volunteering for his campaign. I was anxious-nervous, anxious-excited (like a kid at Christmas) as Election Day dawned. I went to vote.

This was the first time I was ever voting in a community that was not my hometown, and in a midsized city in South Dakota. The poll watcher, who was rather elderly, asked to see my driver’s license. No problem. She asked me to sign the register. Then, she stopped herself, “Honey, can you write your name?” “What?” “Do you know how to write?” Uh, yeah. The woman behind me in line, whom I’ve known for years, goes “Kati can not only write her name, she can spell it, too.” “What?” “I’ll have you know the woman you are speaking about is college educated, and intelligent.” “Oh. Sorry.” I signed in, went to vote and didn’t think any more about the issue. The uninformed woman, was effusively apologetic. “I just didn’t know they let your kind vote.” “Really, what kind is that…humankind?” Well, no, uh…

Subsequently, I’ve seen the poll-watcher at various events in the community. I feel like I should write her a thank you note. I genuinely appreciate her. She is a constant reminder for me that while we, as the Disability Community, have come a long way, we still have much work to do to be seen and valued as equals. It is people like this woman who continuously emphasize just how important my vote is, and why it is vital that I show up to the poll.

In the 1990s, there was a movement called ROCK THE VOTE, to register and politically engage young people. With the upcoming presidential election, the time has come to ROLL THE VOTE, to register and politically engage people with diverse needs and disabilities.

Kati is a small town, South Dakota woman who rolls through life. She is simply trying her best to positively change the world. The former governor for whom she voted is now United States Senator Mike Rounds (R-SD), and it is Kati’s pleasure to work for him as an administrative assistant and researcher in one of his regional offices.

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Zika: We All Have Skin in This Game

/in , /by The Arc

Some public health crises capture our attention more than others. A few years back, the phones were ringing off the hook on Capitol Hill about Ebola. But not so for the Zika virus, we are hearing from Congressional offices. Is this because we think that Zika will only affect women who are pregnant? Or just those who live in southern states? Are we not understanding that this virus could potentially quickly spread in local communities or that people in the south who are at greatest risk right now travel to other parts of the country?

Such a false sense of immunity could cost us dearly. Studies are rolling in and, taken together, are painting an alarming picture. According to a study released last week, two million pregnant women in the U.S. could contract the virus by November while another study finds that 29% of Zika-infected women gave birth to babies with adverse outcomes, including stillbirth, microcephaly, and other serious health problems. Another found that microcephaly alone occurs in up to 13% of babies born to their mothers who became infected during their first trimester. And this is only what we do know. Still unknown are, among other things, the long-term effects of Zika on adults and children who contract the virus after birth. “We still don’t know yet the full rainbow of complications that this virus may produce,” according to the director of communicable diseases for the Pan-American Health Organization.

If we don’t act now, the implications could be dramatic in both the short and long term. For instance, the travel industry could be decimated in the southern coastal states this summer as infection rates and corresponding fear rise. Further down the road, state Medicaid programs could see a surge in demand for services for not just people with microcephaly, but those with the still unknown other disabilities that may be significant and lifelong.

Congress left for its Memorial Day recess before having finalized an emergency spending bill for Zika prevention. When it reconvenes this week, it is imperative that Members hear from their constituents who understand that that Zika prevention is truly a national and urgent priority. Stay up to date on this issue and many others impacting people with disabilities by signing up for our Disability Advocacy Network. Be in-the-know and take action when needed!